Early Easter morning, four and a half years ago, life for our family changed forever. I awoke to the sound of an otherworldly noise and Tina’s body convulsing uncontrollably. That event began us onto a path where we would discover that Tina was suffering from late onset Epilepsy. That path would include long periods of Tina being home-bound and a non-stop roller-coaster of trying to figure out which medications would strike the best balance between controlling her seizures but also limit the debilitating side-effects of chronic fatigue and loss of focus – that effort has only been marginally successful.

On July 14th 2010, our path took another turn when Tina underwent a five week long surgical procedure where doctors at University Hospitals in Cleveland Ohio implanted multiple electrodes into her brain in the hope that this would allow them to locate the spot in her brain that is responsible for her seizures and then surgically remove that spot in an attempt to control her seizures without medication. Unfortunately after 3 surgical attempts to locating this seizure focus, the clock ran out and the risk of continuing this procedure became too great, so they removed all of the electrodes, and sent her home with very little to show for our 5 weeks in the hospital.

When we left Cleveland two summers ago we couldn't imagine that we would go back anytime soon. Those five weeks in the hospital were very disappointing for Tina and difficult for our kids. However, over the course of the last year and a half, Tina's seizures have become progressively more frequent, and medications have become progressively less effective at controlling her seizures. So, after consulting with Tina's neurologists, it is clear that we are in for yet another turn in the path of life.

We will once again be making the trip to University Hospitals in Cleveland, and on Wednesday January 11th, Tina will once again undergo the same procedure to implant electrodes in her brain to monitor seizure activity in the hope that they can determine the physical location of her seizures and surgically remove it.

This is not a path that we went looking for nor did we anticipate how sharply our lives would change literally over night when four and a half years ago these seizures began. There have been days when we have wondered as to why these things were happening and what God was up to in this. What we have learned is best summed up by the Apostle Paul in his letter to the church at Rome where he said that the paths that God lays out for us are "beyond tracing out." We may not understand this path or where it’s leading us, but what we do know is that we would rather follow God’s untraceable path than to follow any path we could lay out for ourselves. This blog is our attempt to bring others along with us as we walk along God’s untraceable path.

Thursday, January 12, 2012

Let's Get This Party Started

Tina woke up this morning (Thursday) having not slept very well and feeling pretty uncomfortable.  True to form we weren't able to settle in until after 1:00am this morning and someone was in pretty much every hour throughout the night for one reason or another.  She was feeling pretty nauseated as well through the night most of which was due to the headache she was experiencing.  The issue didn't seem to be so much pain due the missing skull but how tightly her head dressing was wrapped.  The dressing was causing a lot of pressure which made her head throb.  Finally, this morning around 9:00 our nurse was able to badger neurosurgery enough to get them to come up and rewrap her head.  She felt the relief almost instantly.  Her Nausea has settled and as of right now she's eating her first meal since Tuesday night, and keeping it down... for now.  Overall she has improved 100% since this morning - thank you to all who have been praying.

A couple other positive events of the morning included the installation of a PIC line and the removal of all of her IVs.  A PIC line, as I understand it, is basically a permanent IV that can just stay in for the rest of Tina's stay.  It goes into a main line of the heart and they can both draw blood from it as well as administer medications through it.  Tina has very bad veins and, if you followed our trip last time, you'll remember that after a couple of weeks they were no longer able to get an IV into Tina.  Finally after having 4 different people "stick" her 15 times unsuccessfully they put a PIC line in.  This time, knowing how IV challenged Tina is, we requested that they just put the PIC line in to start with and avoid all of that heart ache (no pun intended).  This was a great relief for Tina to know that she wasn't going to have to deal with nurses working for hours at a time trying to change IV locations.

The neurologist just stopped in and told us that as of right now they're discontinuing all of Tina's anti-seizure meds, and the sooner she has a seizure the better.  They have seen what they call "inner-ictal" activity on Tina's EEG, which just means that they're seeing some some seizure-like activity and based on that, they feel that if this develops into actual seizures then the grid is definitely in the right place.  Good news, but if it's ok with you guys, we're not scheduling our check-out quite yet.

Please continue to pray for seizures and for good data.  I'll post more tonight.
Posted by at

8 comments:

Anonymous said...

head wrapped too tight??? that certainly would give a headache! we are praying now for the usual seizure activity that she's been having. rain here today turning to snow later. winter advisory here.x0x0x0 mom L

January 12, 2012 at 2:17 PM
Anonymous said...

Thinking of you both and praying for all day, everyday. Scott and I can relate to a certain degree. It's not fun having a headache! I'm praying for seizures so you don't have to go through this anymore. Thanks for taking time to keep us updated. I hope the party goes well!
Kari L.

January 12, 2012 at 2:56 PM
Anonymous said...

Thanks for the updates, Matt. We've been thinking and praying for you both and will continue to do so.
Love from the Johnson family,
Kristy

January 12, 2012 at 3:01 PM
Christa said...

Lots of love and prayers! Thanks for the update..I'm feeling late night, early morning...bets anyone? Jk Gods timing!

January 12, 2012 at 4:08 PM
Anonymous said...

I bet Tina dinner (winner cooks for losers family) that I'd beat her home (me from Africa, her from Cleveland. Its one bet I'm hoping I lose :P

Ryan

January 12, 2012 at 5:01 PM
Erin Wenger said...

Thanks for the updates Matt. I asked my Faith Formation class to pray for Tina, you, & the kids last night...must have worked! If Tina has some "down time", have her get on FB and play words with friends with me. It's similar to scrabble. Makes time pass in she gets in a holding pattern. Hugs from the Wenger's!

January 12, 2012 at 5:22 PM
Dave and Kathy Boes said...

Oh my... The head wrapped to tightly...OUCH. I'm sorry.

Thanks for the update, Matt.

Hugs to Tina, please!

Kathy

January 12, 2012 at 5:52 PM
Anonymous said...

Tina's Seussical; (she knows what I'm talking about) Chapter 1 - Your little head is stuck in bed, so have a seizure at your leisure. I love you lots! - Sarah :-)

January 12, 2012 at 11:54 PM

Post a Comment

Subscribe to: Post Comments (Atom)